Sleep problems

A forum to talk about the general challenges of daily life with MS.

Postby cheerleader » Fri May 02, 2008 8:13 am

have to get kids to school and off on the day,
but wanted to hit a couple things...

Jeff likes tylenol pm, because his legs hurt as well as spasm, so this gets it all.

we just tested his hormones since most men with MS have low/normal levels at presentation. Jeff's were normal, but his LH and FSH were SKY high. These are the hormones that come before testosteron, and showed the doc that his body was spinning it's wheels, trying to make testosterone.

Also, google testosterone supplements and MS, and you'll see it has neuro-protective results. Good for the uppper and "lower" brains :)

THANKS to JL....my magnesium guru, for posting our thread. Hope it helps some folks. BTW, Magnesium will move your bowels...not stop 'em, so be forewarned!

L8r,
aging cheerleader
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Fri May 02, 2008 8:14 am

are you serious nenu? what kind of magnesium? it's supposed to do the opposite!
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Postby Nenu » Fri May 02, 2008 8:15 am

My neurologist as well as my nutritionist both said my constipation was probably a result of the magnesium amount. When I stopped, so did the constipation. Maybe it works both ways?

Magnesium Glycenite (sp)
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Postby jimmylegs » Fri May 02, 2008 8:27 am

interesting. i paired it in google with constipation, and searched. this came up as the spelling: Magnesium Glycinate

result: many links to its use in treatment of constipation, eg.

Deficiency often plays a role in anxiety, fatigue, insomnia, depression, muscle twitching, high blood pressure, leg cramps, menstrual cramps and constipation...

Magnesium Glycinate is a highly absorbable form of magnesium. By attaching magnesium to the amino acid glycine, transport of the mineral across cell membranes becomes more efficient


ahhhhh... now what form did we say natural calm was again, or the kinds i've taken... if less absorbable, body fires it through more quickly... and presto.

maybe your brand "stuck" better than others', nenu?
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Postby Loobie » Fri May 02, 2008 8:30 am

Shannon,

I've been dealing with sleep issues from the word go. I started out awakening about anywhere from 4-8 times a night. After I figured out that a great deal of it was from my bladder, I just quit drinking liquids after about 8:00pm on work days and now I only get up once or twice to pee. But wait, there's more! I was still waking up at 2:00am every single night (and still do) and was unable to go back to sleep. I would wake up and not even be groggy. It was like it was just time to wake up. I finally realized after Lunesta, Benadryl, Restoril, Tylenol PM, Rozarum (sp?), et al, that I am going to wake up a couple of times every night no matter what. So for me it came down to figuring out how to get right back to sleep after my pee breaks. And BTW all of the sleep aids were pretty ineffective except the ones that knock you out like restoril and then I would have nighttime accidents, and who wants that? The ones that don't drug you to sleep like Lunesta, simply are completely ineffective on me in terms of keeping me asleep. I can fall asleep in 30 seconds, it's staying asleep that is my problem.

So here's my regimine: I use a combination of marijuana and a very low dose of Diazepam (2mg) and now I get about six good hours of sleep (with a couple of quick wake ups and right back to zzzzz's) a night, which has always been my norm. I can't smoke marijuana for symptom relief anymore because for some reason it started zapping all my leg strength; big time so I quit using it during waking hours. So what I do is take a couple of hits immediately before bed. It allows me to stay asleep from about 10:30 or so until my 2:00 awakening. Then I go pee and that's when I take the 2mg diazepam to keep my bladder calm and I usually sleep until about 5:15 -5:30 and I simply have to get up because at that point I'm incapable of going back to sleep.

Now that's what has taken a good while to figure out for me. I understand you may not be someone who wants to use marijuana, but I will do just about anything to get some sleep after the first couple of years of being exhausted all the time from lack of sleep. I've pretty much used that routine for a good while now and (knock on wood) it still remains effective. I have not, and this is no exaggeration, slept through the night since I've started showing symptoms. It's just not in the cards for me and I can safely say that I've tried just about everything. So there were things that could keep me asleep most of the night, but with those I would pee the bed, and that's just so deflating to me and would cause me much angst when it would happen. Even when I was running five miles a day, I still just couldn't stay asleep. And it's not like I'd wake up worrying about anything or dwelling on my MS. I'd just be awakened by the urge to pee and couldn't get back to sleep.

I know that was kind of lengthy, but I hope it may help. For me it wasn't just taking the right stuff. It's that in combination with having to go to bed with as empty a bladder as I could have. I have tried numerous times to quit this regimen thinking maybe I had 're-trained' myself, but I always end up right back with it, so I'm pretty convinced it is the most effective combination I can do. It really cuts into my beer drinking, but when you aren't sleeping it simply becomes your No.1 priority as anyone who has sleep issues knows.
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Postby AllyB » Fri May 02, 2008 8:34 am

Hi there

JUst a quick word here - I have had RLS for years too - I take Requip and it works well. I also take 30mg Baclofen at night and Lyrica 75mg, Amitriptyline 25mg, and a small dose of Lexotan...!
Al
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Postby jimmylegs » Fri May 02, 2008 8:55 am

a quick poll here on the topic of RLS... do you guys think jimmylegs qualify? or is it just twitches? i don't have that "buildup" feeling i've heard described associated with RLS... just bang there it goes. or maybe my arms sometimes, but jimmyarms doesn't have any pop culture flair...
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Postby Artifishual » Fri May 02, 2008 8:55 am

Loobie have you ever had your urodynamics checked out? When I first started having symptoms, before ms was even a thought, I had some major urinary problems. I even had two noninvasive surgeries on my bladder. The urologist that did them thought there was something wrong with my prostate. I from the begining told him that I had no issues with my johnson it was just that I could not pee. I even had two trips to the ER when I was running an outragous fever from holing urine too long. Since my new urologist had the understanding that I was dx with ms he immediatly started me with the self intermittan cath. This is very difficult to talk about even with strangers. Sorry yall. But it really helped me. Now that has cleared up but ocassionally I still do it. Just to make sure. When this all began I was holding like 650 after emptying. That is just crazy. Most people can't fit that much without pissing themselves. Well I am doing way better now but really you should look into this if you have not. At the time I would have given anything to be able to go. I too had been getting up during the night to pee. Now that is not a factor for me and my sleep, but 2 am is the limit for me most nights.

BTW, thank you for sharing that info to me. I find somethings are really hard to talk about. Even in confession with my Priest. LOL But it is amazing to me how helpful everyone on this site is. I just wanted to say thanks. arti
You are a real classy guy for that Loobie !!
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Postby Artifishual » Fri May 02, 2008 8:57 am

HomeSkillet I get it in my shoulders also. So instead of RLS maybe I have jimmyshoulder?
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Postby jimmylegs » Fri May 02, 2008 8:59 am

HA! maybe. kramer would still kick both of us to the curb regardless of the body part i think
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Postby Artifishual » Fri May 02, 2008 9:01 am

BtW loobie I have smoked Mj when I was younger but I now have to fire people for this and it wouldn't look good on me if I busted a urine screening. LOL
But don't think I am looking down my nose at you. If it works buddy more power to you. I wish they would legalize it. I would def start a big bonfire down here in Tx. Right out in the middle of Sabine lake in my boat. Boy yhat sounds like alot of fun!!!! :D Smoke it up big hommie
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Postby jimmylegs » Fri May 02, 2008 9:07 am

hey shan check out this thread of robbie's, it gets into the men's urinary issue:
http://www.thisisms.com/ftopic-5411-days0-orderasc-0.html

the jimmy angle on that, too, led to magnesium... and zinc.. i have to re-read and see if i can locate any more info on the zn aspect.

'legs out
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Postby Artifishual » Fri May 02, 2008 9:20 am

Guess i'll go get some mg and zinc. What can it hurt? My walnut (prostate) is healthy i've had it checked both ways blood/finger. Not pleasant. besides my uro would not have given me depo with the chance of cancer. Testo makes prostate cancer scream hello. Well off to the pharmacy, later shannon.
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Postby jimmylegs » Fri May 02, 2008 9:59 am

the table below gives an idea of a target for your zinc levels.

i started at 8.6 in november '07, and i'm aiming for that female 'controls' bracket, in the neighbourhood of 13.2

what the heck, i think i'll head over and deal with that follow-up zinc test at the lab right now...

Code: Select all
             Males (n=21)          Females (n=21)
             MS         Controls   MS         Controls
Zn(µmol/l)   13.0 ± 1.9 14.8 ± 1.6 12.1 ± 2.1 13.2 ± 1.6
Cu(µmol/l)   14.7 ± 3.7 15.3 ± 1.6 15.7 ± 3.3 16.8 ± 2.1
Albumin(g/l) 42 ± 3     43 ± 4     41 ± 4     41 ± 3

Palm and Hallmans. (1992). Zinc and copper in multiple sclerosis. Journal of Neurology, Neurosurgery, and Psychiatry45:691-698
Last edited by jimmylegs on Fri May 02, 2008 10:04 am, edited 1 time in total.
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Postby cheerleader » Fri May 02, 2008 10:10 am

RE: magnesium-
Natural Calm is magnesium citrate (the stuff they give you before a colonoscopy!) Keeps Jeff regular and relaxed.

Jeff has Jimmy- legs, arms, shoulders, hands and face. He kinda goes thru a whole cycle at night while falling asleep...like a rhythmic twitch in each area. Might not be RLS....just MS. He's had it 20 years.

Alot of MSers have urinary issues. I think Robbie was looking into stuff with his urologist, maybe a catheter. This was Jeff's embarassing issue....when he had his first flare, he peed himself a couple of times, and then had trouble going. Really scared him. Bladder disfunction is real common. Jeff is OK now that his MS has calmed down.

It's so good to have this forum to share. There is nothing to be ashamed of, Arti. This disease blows and sucks at the same time (to quote JL and Ian) and if we don't help each other, we'll feel even more alone in it. We're not....
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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